Hello everyone, my name is Maria and I live in Brisbane, Australia.
4 - 5 years ago my darling husband, Gene, started to suffer hearing loss in his left ear. He went to a specialist to have it checked out who told him that he must be suffering from industrial deafness and told him that he would have it forever.
A year afterwards his hearing loss was considerable and he went to the local hospital for a second opinion. Gene was diagnosed with an AN measuring 3cm in late August 2002.
Three weeks later he was scheduled to have surgery to have it removed. The doctors here stated that the translabyrinthine surgical approach was the best option as Gene's hearing had considerably deteriorated and that loosing the hearing from his left ear would be ok.
On 27 September 2002 Gene had his surgery. The surgery took 14 hours. After surgery we were told that they did not remove all of the tumour it was through the facial nerve and the doctors preferred to preserve the facial nerve.
Three years on and three MRI scans later, we were told on Friday that the tumour is starting to grow again. Given that the first surgery damaged Gene's facial nerve in any event, I am really angry that the doctors choose to leave some of the tumour because they "preferred" not to cut the facial nerve.
Over the past three years, we have heard too many different stories from the doctors here in Australia. One was that if they had removed the whole tumour and severed the facial nerve that they could have fixed it my removing a nerve from Gene's leg and attaching it to the cut nerve and that his facial nerve damage would be where it already is today, however we wouldn't have the agony of annual scans and waiting for results. I apologise, I am just angry. I love my husband with all my soul and I find my hands are tied with finding a better solution.
The options that have been given to us is for radiotherapy. Apparently, we have to go to Sydney, Australia for this treatment. The doctor has told us that there is a high chance that Gene will completely loose his facial nerve and that there is a 1/1000 chance that radiotherapy may turn the tumour from benign to cancerous. We have also been told that there is only a 40/60 chance that the radiotherapy will stop the tumour growing, and that it does not in fact kill the tumour, only stops it from growing. We would have to endure scans annually forever.
We have been told that if the radiotherapy does not stop the tumour from growing that Gene will need another operation and this time they will take the tumour and facial nerve. Gene will be back worse than when he started from. Now they tell us that they would probably not be able to repair the facial nerve with another nerve as the tumour was attached to the brain stem and that it would not leave any room to stitch the new nerve.
I have read some posts about radiosurgery using the cyberknife method. I am happy to fly to USA for Gene to have this procedure providing it works. Is there anyone out there who has had this done, or can provide me with any advice as to where to go from here. I am desperate for answers please help.
Thanks for reading.
Regards
Maria
PS(I am really happy that there are so many inspirational and happy stories on this website. It really gives us a glimpse at some hope.)
